MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

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Replies by: Janner

Hey all,

 

  I'm a 33 year old male living in Albany, NY.  I have been newly diagnosed with a malignant melanoma on my left calf, at the site of a large mole I've had for many years.  It seemed bigger than I remembered it a few months back and after scheduling a biopsy with a dermatologist, I've been referred to a plastic surgeon who's scheduled for a wide excision in their office in just over a week or so.  I'm having a hard time deciding about a Sentinel Node Biopsy at the time of excision.  

  I will preface any clinical info about the melanoma itself with this: I'm a musician who works part-time in the food-service industry who has been uninsured for many years, and without a primary doctor to turn to for advice on this.  

   I feel pretty comfortable with both the dermatologist and the plastic surgeon, but I don't think either of them are melanoma specialists (and I don't say that to demean their capabilities, just that both of them work at practices that are more cosmetic than medically drivien).  

   The clinical test results (which I'll post for reference here) seem to mostly point to a SNB being unnecessary, but the plastic surgeon mentioned a couple of times that that b/c I'm young, it would be something to consider (I've read that for people under 40 with malignant mel., SNB is recommended).  The plastic surgeon (who, of course, I would never expect to give a definitive "yes you should" or "no, you shouldn't" answer to) said that if he were in my position, he would consider having it done as the Breslow thickness is close to the range they would recommend testing for anyway.  In his own words, he's "on the fence" about it.  He also mentioned that complications, possibly long-term, can occur with node removal, such as fluid pooling in areas associated with whatever lymph they remove.

 

  Here are some of the clinical details

   White male, 33 years old, smoker

   Mel. Location: Left Calf

  Type: superficial spreading

  Breslow Thickness: 0.88mm

  Clark level: 3

  Mitotic Rate: 1/mm2

  Vertical growth phase present

  No ulceration, no regression, no microsatellitosis, no angiolymphatic invasion, no neurotropism

  TIL's: non-brisk

  Precursor lesion: present, intradermal nevus

  Pathologic stage: T1b NxMx

  No family history

 

  Can anybody argue for or against a SNB in this context?  I feel reassured that the thickness of the tumor is in the low range, but knowing how long the spot has been on me and NOT knowing exactly how long it has been cancerous has me a little stressed about making the desicion, and wondering if anybody has any wisdom to impart concerning low-stage diagnosis and the desicion to go ahead with or skip the SNB.

   I mention again here that I'm uninsured.  An in-office wide excision of the mole (I don't have the exact number here, but I think the dermatologist said 16mm across at the widest point) will run about $1500 out of pocket at the plastic surgeon, and uninsured hospital bills associated with a SNB will be far more than that I'm sure.  I realize there is no price to put on your health, but I earn just a few hundred dollars over any kind of Medicaid assistance levels, working for a small mom-and-pop shop that hasn't been able to raise my wages in any meaningful way in over 5 years due to their own financial struggles, and while I'd be GREATLY, GREATLY relieved to find a node biopsy returned a negative diagnosis, I'd be hit pretty hard in the purse if I raked up several thousand dollars (I'm guessing at least?) for the sake of the knowing...

  For the most part, the clinical results say SNB wouldn't be needed, but I've become a bit worried that some of the constantly feeling run down and almost sick all the time isn't just a reflection of my lifestyle, but possibly indicitave of something else.  If I understand correctly, you have to decide before they remove the melanoma otherwise they can't pinpoint the lymph associated with it before t, which is a tough desicion to make quickly.

   So a few quick questions and then I'll wrap up with hopes of getting some help from what seems to be a great community of supportive folks:

   Why is SNB reccomended for people under 40 even if the initial biopsy results and clinical info seem to point to not needing it?  Is it because they have better resilience to removal of a node, or is it because lymph node cancer can build for longer periods of time in young people before they start noticing it, hence the idea of catching it early?  I didn't get to ask the plastic surgeon about that b/c I forgot, not b/c he wasn't attentive to my questions.

    How often do people experience permanant or long term complications based on the removal of a lymph-node for the purpose of a SNB?  I've heard that fluid draining can be an issue after removal, and I wonder what kind of long term that in itself needs.  Do you need to regularly drain fluids in a medical environment for areas affected by a lost node, or will being active and on your feet all the time take care of itself naturally?  Does anybody have any stories about this, good or bad?

   Should I consider a second opinion at this point?  I obviously want this thing to come off ASAP, but I'm wondering if someone with a bit more of specialty (melanoma specialists in Albany seem to be pretty few and far between) could be of better help in making this desicion.  I think that both docs that I've seen are very smart, capable men, and they've been quite patient with my questions, but again, neither are of them are my primary care physicians (I don't have one at this point and have used a medical clinic in downtown Albany for many years) with any knowledge of past health history, etc...

   Any ideas on low-cost, sliding-scale, specialists in the upstate NY area would be more than welcome too!

   Thanks to anybody who may be able to offer any insight on this!

  

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arthurjedi007's picture
Replies 5
Last reply 8/26/2014 - 10:51pm

Just an update if anyone is interested.

I believe I'm really lucky with this brain stuff so far. Basically the one skull tumor that is growing is pressing on the outer layer of the brain and displacing the brain but nothing is in the brain. The other 2 tumors are actually a little smaller than they were in February with one of them still pressing on the outer layer of the brain but it doesn't displace it. I assume that's the PD1 working some but dunno. So why didn't they radiate last February when the mri said I had a tumor pressing on my brain? I dunno. That was my local onc doc then and now I have my mayo doc. That was also the time I was almost paralyzed so I didn't really look at the mri i guess.

Anyway my local radiation doc is actually more concerned with the spine. Apparently there is some more spinal cord stuff happening like last February although I'm not really experiencing much symptoms yet. My mayo doc did confirm after reading the mri reports that the spine needs radiated too. So the plan is PD1 on Sept 3. Radiate t12 and l2 in spine at 30 gray in 5 fractions Sept 8 to 17th. That is the same plan that shrank the t10 in March and now the PD1 is continuing to shrink it.

For the skull though he basically said he hasn't decided the best way of doing it. He hasn't got it in his head yet he said. He also said he will be talking to his colleague about it. He also didn't want me on the table that long and not being able to stay still for 30 plus minutes. So he's going to decide how to do it and do it after the spine. So the plan is PD1 on Sept 24. Radiate skull in some fashion starting around Sept 26.

Like Joe said about the dosage needing to be higher per zap for melanoma he did say it would be higher than 3000 (ie: 3 gray I think) probably something like 4100. I guess that is a little over 4 gray. But he was not sure about a minimum of 6 gray to the skull. But he hasn't decided anything with the skull yet. He was talking more about focusing the beams directly and things instead of the standard area blast. So I think he's on the right track. I also think if he can shrink it even a litle maybe the PD1 will take over.

I hope I get the radiation/pd1 combo miracle that some people get. We shall see.

 

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Anonymous's picture
Replies 3
Last reply 8/26/2014 - 11:15pm
Replies by: Janner, Anonymous

I was just denied a 20 year term life insurance policy because of an early stage 1 melanoma from a couple years ago.  If the survival rates are really as positive as what I thought, why would an underwriter decline coverage if the expected survival is 90%+ ?

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/26/2014 - 10:15pm

This is a qestion for anyone that can help and I will provide all of the information that I have. Here goes. I work with a lady that was diagnosed with stage 4 OM about 6 years ago. This is where I don't have all the info as to what happened at this point but fast forward about 5 years of checkup and clean scans to the last year where she has had a mestastasis to the liver, She has taken IPI that she did not tolerate very well ( made her very sick with colitis) She has also had a few ablations to the liver that did well but the tumors would come back. Last week her doctor sent her home with a bottle of pain pills and told her that was all he could do for her. She now has active tumors in both lobes of the liver. She sees doctors at The West Clinic in Memphis,TN. I'm not sure if the doctor is a melanoma specialist or not but my real question is this. Does anyone know of any stage 4 melanoma studies going on now that she could possibly get into. This could be her last hope!

Thanks for any input & again what i have stated her is really all the info that i have about her case.

 

 

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GAngel's picture
Replies 2
Last reply 8/27/2014 - 3:14am
Replies by: GAngel, jualonso

I wanted to share the good news and update everyone on Rudy's health status. His last scan on July 25th showed no evidence of disease. The date of that scan was the 1 year mark of him starting the combo and 8 months NED status. His oncologist said that Rudy is one of three of his patients that are still responding to this therapy with Rudy being the patient with the most months of NED status! It's important to note that for the past 4 months Rudy has been on an intermittent dosing schedule of 2 weeks on combo 1 week off. He took a 1 month break from the combo back in April which was the month before he started intermittent dosing.  Taking a month off of the medication was Rudy's idea and he did not tell his oncologist until after the fact.  His doctor scolded him and said that Rudy had dodged a bullet and that what he did was "non-compliant" but he was smiling all the while and quite amazed that his scan was clear despite his rebellion.  

I'm sure that many are thinking that Rudy is playing russian roulette but it's not a decision that he made lightly. For him, it's a quality of life issue along with a strong belief in the effectiveness of the alternative meds he is taking.  I have shared before that Rudy has been taking hemp oil since May of 2013 (he was diagnosed stage 4 in February 2013).  We believe that the oil is playing a big role in his success so far in battling this disease.  The hemp oil  (he makes it himself) is not legal in this country, yet, it has proven healing abilities and is safer than any chemotherapy drug offered by the pharmaceutical companies. There are no side effects other than slight drowsiness. We know personally two melanoma patients who are both currently NED status and the only treatment they have ever done is hemp oil.   I am not suggesting that this is the answer for everyone...I'm just letting you all know that there are other things out there. Not all are "snake oils" just because they have not been FDA approved. Do the research...dig deep, it's your life...do all you can to save it.     

We also strongly believe in having a positive mental attitude and eating a healthy diet. Last but of most importance to us is holding on to our faith, knowing that it's all in Our Heavenly Father's hands.

God bless you all!

Gina  

 

 

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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liam1209's picture
Replies 9
Last reply 8/26/2014 - 10:38pm
Replies by: RJoeyB, hbecker, liam1209, Ed Williams, Anonymous

After seeing Dr. Steven O'Day at BH cancer center and Dr. Wong at USC here is where we are:

Would love to hear your thoughts on treatment options and/ or clinicla trials you would suggest. BRAF test negative 

In July of 2013 a nevus/nevi was removed from the crown of patient’s head and pathology was negative for melanoma

In February of 2014 patient experienced swollen lymph nodes neck and armpits patient thought due to contact dermatitis and generally “feeling poor” for a few days.

Lymph node on left neck behind and below ear remained swollen.  After consults and CT lymph node surgically removed June 18.  Results on July 21of immunochem analysis were for metastic melanoma (MM)

Aug 4 CT indicates two small nodules (about 1 cm) in lungs

Aug 18 cerebral MRI negative and PET/CT indicates only the two nodules in lungs.  Decision on needle biopsy of lung nodules pending

Patient has definite Stage III and probable Stage IV metastic melanoma with unknown (suspected July 13 pathology report in error) primary origin.

Recommended treatment options:

1.       FDA approved Interleukin-2 or IL-2 (requiring hospitalization) possible severe reactions during treatment but post-treatment side effects.  Understand low (10%) “cure” rate

2.       FDA approved  Ipililimumab  or Yervoy (outpatient with supervision) possible reactions and side effects before and after treatment. Understand moderate (30%) “cure” rate

3.       PD-1 which is expected to be approved in October by the FDA (outpatient with supervision) possible reactions and side effects before and after treatment but fewer than #2.  Understand good (65%) cure rate and works well with MM lung tumors.

4.       Clinical trials

 

Cheers 

Liam

Liam 

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Resilient4Life's picture
Replies 1
Last reply 8/25/2014 - 5:59pm
Replies by: Janner

 

Just received notice of my surgery date for Stage IA melanoma. It is exactly one month after the biopsy. Reading on the web indicates this is fairly normal, but a wait of 1-3 months would be unwise and excessive.

Should I do anything special for the area while I wait? The dermatologist's office gave me a petroleum based ointment. I have read that petroleum products cause cancer. I'm using a homeopathic salve instead. Does it make any difference how clean I keep the spot? (Hydrogen peroxide 3 times a day followed by ointment) Obviously  some attention is necessary,  but don't want to go overboard.

Thank you for your response.

 

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audrey_borgstrom23's picture
Replies 1
Last reply 8/25/2014 - 3:25pm
Replies by: Janner

A couple questions that I hope someone can answer!

I am a 23 y/o female, diagnosed with melanoma 5 days ago. The initial biopsy was 12 days ago. I was told at the time this "spot" was removed that it didn't look like anything but did a shave biopsy just in case. It was done by a PAC (a young woman only a few years older than myself) who said she would be surprised if it came back as anything.

Exactly a week later (last week Wednesday) I got a call that it came back as melanoma and that I had to go back to get the surrounding area excised. The next day I had the surgery done. They said all should be fine, come back in 6 months for a check up.

On Friday, I had the dermatologists office fax over the pathology report from the initial biopsy. Lots of big words, but a couple things stood out. It said the melanoma was at least 0.4mm deep and at least a clark's level III. I think it read "at least" because there was a sentence that stated that although a majority of the depth had been sampled, there was transection at the base and a deeper more invasive melanoma cannot be excluded.

Now to me, I'm thinking that when this PAC did the biopsy, she didn't think it was melanoma and so she actually shaved off most of the tumor, but not all of it.

I'm wondering if this has increased my chances of the spreading of the cancer. Or if it doesn't really affect that at all. And what are the chances that the melanoma is in fact deeper than 0.4mm? I understand this is a thin melanoma. The results of the excision should be in by tomorrow, but I just wanted some input from anyone with experience with this?

I appreciate your time in reading this, hope to hear some input soon! Thank you all greatly!

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robbier's picture
Replies 3
Last reply 8/25/2014 - 9:25pm

After 4 surgery related biopsy. Being sent to MD Anderson back in May 2014. Here is my update: July 23; 2014 pet scan showed 2 areas of concern. On in the pelvic area, the other the mid right shaft in the right leg. Was sent for a bone scan Aug 12th. I chose to go to hospital to get the results before going back to see cancer Dr Aug 12th . I wanted to know the results, because we the doctor and myself where to talk treatment. Results from bone scan no abnormalties seen in pelvic area, no abnormalties seen in mid right shaft. No evidence of metastasized disease seen. I thank God for this! Doctors appointment I ask my Doctor what's next? Treatment? His reply was you can't treat something that is not there. Again I praise my God.! At this time I will be followed next test and appointment not until October or November. Very happy lady and I still give my God the credit for helping me through. Robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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hass71's picture
Replies 3
Last reply 8/24/2014 - 7:50pm

hello

tomorrow my wife will start her first session on Yervoy IPI treatment (melanoma stage 4), so i need some advices going through this treatment, what shall we expect, how to deal with side effects.

thank you for your support
need your prayers

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I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Anonymous
Replies 6
Last reply 8/27/2014 - 1:20am

I'm struggling here as my family thinks I need to totally change my diet to avoid a recurrence if melanoma. This was discussed with my oncologist who told my father that I didn't progress to Stage 4 because of diet. It was acknowledged that diet is key to general health and well being. Diet doesn't destroy body's ability or immune system to recognize melanoma cells and destroy them. Though it was highly suggested as much as possible to avoid processed foods.So bascially message was diet is helpful but not necessarily going to help avoid a recurrence. Also, my diet isn't great and it isn't bad. It probably needs to be a little more balanced. Not a ton of processed foods but I do like a cookie or ice cream here or there....

I've researched this some and you find arguements that go either way.....adamant that diet is crucial while I saw MDA says "sugar isn;t cause of cancers" or lead to cancer. So which is it? This is very confusing....

Let's work for better treatments....for a cure!!!!

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BrianP's picture
Replies 9
Last reply 8/26/2014 - 10:21am

This is a pretty interesting 8 minute panel discussion on checkpoint inhibitor Combination Strategies.

Joe, I think you'll find the discussion interesting on TIL therapy and some discoveries they've made recently on why TIL sometimes works initially but then there are recurrences.

G-Samsa, I looked through the 2014 ASCO abstracts and couldn't find anything relating to the side effects to the lungs you recently mentioned but there is a little discussion to PD-1 side effects in this video that may be what you were referring to. They mention that anti-PD-1 not only blocks PD-L1 but also PD-L2. Apparently PD-L2 is needed to promote homeostasis in organs and prevent pneumonitis in the lungs which can be very dangerous.  This is why they think that anti-PD-L1 is so far having less side effects than anti-PD-1.

The link is to part 4 of a 5 part panel discussion. I haven't watched all the discussions yet but found this one pretty informative.

http://www.onclive.com/peer-exchange/immunotherapy/Checkpoint-Inhibitor-Combination-Strategies

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/23/2014 - 10:21pm

My mother is a case of melanoma left heel with left inguino pelvic lymphadenopathy. Wide local excision done with lymphnode dissection done on 14/05/14

We are based out of India

Docs did tell us it quite rare. Post surgery, they have opted for wait and watch . The surgery happened in May and we got CT chest and CT whole abdomen (triple phase) done on August 2. CT chest shows no abnormality. However, CT whole abdomen (Triple phase) shows subcm right external iliac node measuring 2.0x .9 cms. Docs have again called us after 6 weeks for follow up on this. I am confused and scared ..is this spreading? How bad is this?

Also, her CBC(Haemogram Complete)-C/71 shows decreased haemoglobin from 12.5 to 11.4 now. Total Leucocyte Count as 13200 (reference range 4000-11500), Monocytes as 8.6 (reference range 2.6-8.5) , MCV 76.3 ( ref range 80-101), MCH 25.0(ref range 26-38).

She is not under any medication right now.

Please suggest how bad is her condition? What is her life expectancy in this case? I am terrified and scared. I love her.

Look forward to hearing back.
 

God bless you

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